Why We Need to Stop Referring to IgE-Mediated Allergies as 'True' Food Allergies

This is an open letter to all healthcare professionals from a food allergy mama and Registered Dietitian.

I am writing to you as a mother to children with both IgE mediated and non-IgE mediated food allergies. As many of you are aware, allergic reactions commonly seen in the media are IgE reactions — those that could turn into fatal anaphylaxis. The less commonly talked about food allergies are non-IgE reactions, such as food protein-induced enterocolitis (FPIES) or a non-IgE cow’s milk protein allergy. These ones are non-anaphylactic and come with mostly gut-related symptoms. But they are still real allergies.

Children with an IgE milk allergy may experience symptoms like swelling, vomiting, hives or difficulty breathing — which may progress to anaphylaxis. In non-IgE milk allergy, symptoms are delayed and may include diarrhea, mucus or blood in the stool, vomiting, and even failure to thrive. Strict avoidance of the food trigger is a must, regardless of the type of food allergy. Parents must be vigilant with label reading and avoiding cross-contact. The social, emotional, and financial burden of food allergies are real, and they do not discriminate between the two types.

When my son was diagnosed with a cow’s milk protein allergy, several healthcare providers told me it wasn’t a “true” food allergy, that it was more of an intolerance. While I appreciated the distinction that this particular food allergy was not life-threatening, it felt invalidating at the same time. Is it accurate to lump non-IgE food allergies as a food intolerance?

Let’s look at two examples of food intolerances — lactose and gluten — to see if we can answer this question. I am lactose intolerant, which means my body does not have enough enzymes to digest lactose (i.e., sugar in milk). Most people who are lactose intolerant can eat small amounts of dairy. I can have a splash of milk in my coffee, but I cannot drink a cup of milk without popping an enzyme pill or face the bowel-related consequences. Yes, there is a pill you can take for lactose intolerance (but there is no pill to treat a milk allergy). No, children with a non-IgE milk allergy cannot have small amounts of milk (unlike those who are lactose intolerant).

Now let’s consider Celiac disease versus gluten intolerance. Celiac disease is not a food allergy per se, but rather an autoimmune disease where a lifelong avoidance of gluten is called for. If a patient consumes gluten, malabsorption (or the inability to absorb nutrients) occurs. In contrast, those with gluten intolerance do not experience malabsorption, despite having disruptive gastrointestinal symptoms. Malabsorption can also occur in non-IgE allergies leading to failure to thrive.

Labeling non-Ige milk allergy as an intolerance gives a false impression that these children can tolerate trace amounts of milk, and downplays the malabsorption factor. And despite it being a non-fatal food allergy, parents have to take steps to avoid the allergen, similar to those living with an IgE milk allergy.

Another non-IgE food allergy that is not often discussed is FPIES, or food protein-induced enterocolitis. This is a rare food allergy that can involve multiple foods as triggers. In acute FPIES, symptoms include profuse vomiting that could lead to extreme dehydration and shock. Unlike typical anaphylactic reactions, an EpiPen is not the first line of treatment in FPIES. Nonetheless, it is still a medical emergency and requires immediate IV fluids as treatment.

As a mother to a child with FPIES, I often wonder what I should tell the paramedics if I find myself in an FPIES-related emergency. I am hesitant to say that my child has a food allergy because the first thing they would do is administer epinephrine, as opposed to starting an IV. I am not alone in this thought. Many parents struggle to explain FPIES to healthcare providers, particularly in an emergency setting. And yet in FPIES, a severe reaction would require immediate medical attention to prevent shock.

When we label IgE food allergies as “true” food allergies, it leaves little space for other forms of food allergies to be taken seriously. We need to go beyond the conversation that “true” food allergies lead to anaphylaxis. And we need to change the language we use.

It’s time we talk about all allergies — and better communicate the different types of symptoms for both types of allergies. I’m not trying to downplay the severity of IgE allergies. On the contrary, I strongly believe we need to talk about what anaphylaxis looks like, and how a reaction may or may not involve widespread hives. We also need to go over some of the less typical symptoms, such as vomiting and a sense of doom. Misconceptions around anaphylactic shock still abound.

So why does the language we use matter? It shapes the way we perceive and communicate. The way we currently talk about food allergies minimizes the visibility of non-IgE food allergies, and the impact they have on families.

To the healthcare providers reading this, please do not take what I’m saying as a criticism. My hope is that we can change the way we talk about food allergies so that we do so in a more inclusive manner. Let’s call them what they are: IgE food allergies and non-IgE food allergies. I know what many of you are thinking — those scientific terms are too complicated for the general public to understand.

Rest assured that these terms are already being used among food allergy parents in social media circles. You would be speaking their language. We have the power to change the conversation, and it starts with the language we use.